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Category: prescriptions

Continuing Down The Road Of Integrative Medicine

May 3, 2013 / / 3 Comments

So today is my birthday and no, this is not a post about how great birthdays are; even though they are great! Rather, I am giving myself the birthday gift of writing a quick blog about something important to me and maybe to you too. With our wedding coming up in fifteen days, my writing frequency has taken a sharp decline lately, hence why it is important that I hunker down and get this written so that I can then take my pooch out and enjoy this beautiful day.

As I wrote in a previous blog Going Down The Road Of Integrative Medicine, since November, I have been going to a wellness center in a nearby town to see an integrative medicine doctor in the hopes that they can help resolve some of my autoimmune issues. Because let’s be honest, I have been treated for Sjogren’s syndrome for over five years now by traditional doctors and I haven’t really gotten too far. Actually last year, I would say that in many aspects I even got worse. I have some very excellent specialists who know what they are doing but I am beginning to learn that chronic illness, especially autoimmune disorders, are extremely difficult to manage and treat. When they are treated, it usually means with potent and caustic medications, some of which can eventually kill you. The medications used treat the symptoms, not the cause of the illness.

Don’t get me wrong, I am not abandoning traditional western medicine. I feel strongly that there is a place for medications like steroids and stomach acid blocking medications (PPI’s). However I also feel strongly that staying on these medications indefinitely is not the answer to managing my Sjogren’s. For someone else, it may be and that is OK. But there came a point last year where I looked at my medication list and it contained about fifteen different prescription medications. And I was still pretty sick.

As I wrote about in the previous blog, I began my integrative medicine journey by starting an alternative medicine for autoimmune illness called LDN and I also started with allergy testing. Since then, I have spent countless hours, fifteen hours to be exact, having extensive intradermal allergy testing done. I was shocked by the results. I am allergic to most molds, weeds, grasses, and trees as well as cats and dust. I now receive five allergy shots every single week.

As many of you know, I also changed to a Paleo diet. This was not suggested by my integrative medicine doctor but rather it was something I researched on my own. I strive for an 80% compliance rate with this way of eating.

However as the months went on, I started to become frustrated with my integrative medicine doctor. I felt very rushed during my appointments and I didn’t feel like I was being treated as a whole person, which is an integral part of this modality of treatment. I was anxious just going to these appointments. I wasn’t getting returned phone calls in a timely manner over an issue that was pretty significant at the time and I felt like my practitioner and I were not connecting in a therapeutic way. He wasn’t the right doctor for me.

However I had been doing a lot of research about the use of integrative medicine in treating autoimmune illness and on top of that, I really liked the rest of the staff at the wellness center. I looked into switching to another provider. I have to be honest, this was very difficult for me because I still have a hard time advocating for myself at times. Especially since this is a relatively small practice and I knew there was a chance of running into my old provider. But at the end of the day, my health and wellness is the priority.

Yesterday was my second visit with my new practitioner. I will call her S. She is a physician’s assistant who is new to the practice. This did give me pause when I made the appointment because I wanted to make sure I saw someone with experience. I decided to take a leap of faith and it certainly paid off.

I never feel rushed during my visits with S. and she made it very clear that she is there to help me get as healthy as I possibly can. One of her concerns was about the GERD medicines (PPI’s) I am on due to my Sjogren’s. I knew there were risks to long term use of these medications (Nexium and Zantac) but I didn’t know the full scope of the risks and issues associated with their use. If you do a Google search of “risks with PPI’s”, you will see what I mean. She also explained to me about how our body needs stomach acid for proper digestion and that it is likely I am not absorbing the nutrients and supplements that I am taking because I am suppressing my natural stomach acid. It seems counterproductive to me to eat very healthy and take supplements if I am counteracting their effects. However I also know that my reflux issues are real and severe due to my malfunctioning esophagus. I have had some relief from dietary changes but it hasn’t been enough.

S. suggested two supplements that I can take for my stomach (Mastica and Zinlori 75) that helps restore the natural state of digestion, rather than suppressing it. She told me to stay on my prescription meds until these have a chance to kick in and then if I feel comfortable with it, to start weaning off of them. She compared the PPI’s to prednisone. They both suppress the problem but they do nothing to solve it.

This is where things become tricky for me. I do realize that as my prescription med list shortens, my supplement list gets longer. And I am OK with that because it is part of getting my body to heal itself and I imagine I won’t be on these supplements forever. I have also noticed that as the shift occurs, I am starting to feel better. However the issue for me is trying to deal with all the other specialists that prescribe these medications. To them, they are doing what they think is in my best interest but they are not the ones living with the consequences of these medications; many of which sometimes don’t even work all that well.

So I had a heart to heart with S. about this. I explained to her that I take a lot of crap from my other doctors for going to the wellness center. There is an incredible amount of resistance in the medical world to the concept of the body being able to heal itself. I have already had to deal with my rheumatologist and pulmonologist regarding this and now I am going to have to face my gastroenterologist who is old school and most likely will flip out over me weaning off my meds. S. was very supportive about this. She gave me a great pep talk about continuing to advocate for myself and my body. She said that it is my choice to take her recommendations and there is no pressure to do so. She spent a lot of time printing out some appropriate articles for me that may be helpful to present to my other specialists. Our discussion reminded be that I am strong and resilient. I have to remember to be that way when I go to my other doctor’s appointments. S. made me feel like we are partners in this journey and it was in that moment that I knew I could trust her. I knew she was the right fit for me.

I will be honest, the road of integrative medicine is still a very scary road for me. It defies everything I was taught in nursing school. It defies everything I have been told by the bazillion doctors I have seen over the years. That being said, I know in my gut that something about it feels very right to me. As my medication list shortens more and more each week, I look at where I am now compared to where I was at this time last year and the evidence is there. I may not be a vision of perfect health and I may not be in a place to go back to work yet, but I am definitely several steps closer.

I know that what may work for managing my health may not work for everyone. But I am taking the time this morning to write this because I want people to be aware that there are other options to treating your autoimmune illness, as well as the many other chronic illnesses. There are answers and soutions beyond the pharmaceutical industry and I think we all owe it to ourselves to explore as many of those options as we can whether it be vitamins, supplements, diet, exercise, massage, acupuncture, meditation, stress management, yoga, reiki, prayer…whatever it is that you feel comfortable trying. Open up your computer or visit a bookstore to learn more. Don’t settle for what you’ve been told. Don’t settle for the words “there is no cure.”

Learn.
Fight.
Reclaim your body.

Going DownThe Road of Integrative Medicine

January 7, 2013 / / 6 Comments
 

“Progress always involves risks. You can’t steal second base and keep your foot on first.”~ Frederick B. Wilcox

 
 

I had been toying with the idea of seeing an integrative medicine doctor regarding my autoimmune issues for over a year. Integrative medicine takes into account the whole person and uses both conventional and alternative medicine as treatment. It focuses on body, mind, spirit, and community rather than just flesh, bones, and organs. It combines conventional medical treatment with complimentary and alternative treatments (CAM). Some of these CAM practices and treatments include dietary supplements, energy healing, clinical nutrition, and detoxification. Integrative medicine focuses on eliminating the cause of the disease rather than just managing the symptoms. Some people see integrative medicine doctors as quacks and some people view them as miracle workers. I know people who have seen them and the reviews have been mixed, although I would say I have heard more positive experiences than negative ones.

Despite the fact that the autoimmune illness I have, Sjogren’s syndrome, had been unstable for years (except with higher doses of steroids which are a nightmare to deal with), I had put off the idea of seeing an integrative medicine doctor. It wasn’t that I hadn’t dabbled in what I guess would be called alternative medicine, such as acupuncture and massage, but the idea of anything other than standard Western medicine making me healthier seemed foreign to me. Maybe that was due to the fact that I am an RN. I have been trained in traditional medicine and it is all I’ve ever known. However it was becoming clearer to me that perhaps traditional medicine alone was not going to be the answer for me. Not that I was looking for a cure mind you. I had accepted the fact that I have a lifelong chronic illness. But rather, I needed more effective tools and treatment to improve my quality of life because as it was, that quality of life seemed to be going downhill year by year.

So this past November I went in to see a doctor at Northampton Wellness Associates here in Massachusetts. The practice is a group of integrative health care practitioners. I will admit, I was skeptical but my skepticism dwindled as I spoke with my new doctor. We discussed my history and a lot of the things he said made perfect sense. For a while now, I have often wondered if my autoimmune problems were triggered by the radiation therapy I had for lymphoma in 1996. I was never a particularly sick child or teen but from 1996 on, one health problem after another crept into my life. I did not share this theory of mine with my new doctor (Dr. L) but he said the same exact thing to me. He thinks that I am genetically predisposed to an autoimmune disorder (my sixty-five year old father was recently diagnosed with one) and that the months of radiation treatments brought out the autoimmune illness. He was quick to point out that this was unavoidable. I had to have the radiation in order to save my life, but now we must also figure out the best way to deal with the end result of that possible trigger.

He also went on to explain that most of the symptoms I experience are autoimmune in nature such as my asthma, migraines, joint pain, allergies, etc. Now I had always thought this and my rheumatologist had made some associations, but the further back we looked into my adult health history, the more I realized how connected all my ailments were. Dr. L also stressed that there may be several other contributing factors to my autoimmune issues such as allergens, environment, diet. etc.

We came up with a plan. I agreed to go for allergy testing which would initially be done by blood work. He did warn me that the blood testing for allergies is not always accurate but it is the least invasive preliminary step in the allergy testing process. I ended up testing positive for two different mold allergies that are often found on certain foods and so I am now beginning to attempt to eliminate these foods. Luckily, many of them are gluten or dairy based foods, which I already have eliminated from my diet.

However my blood allergy testing also did NOT reveal a cat or dog allergy; both of which I know for a fact I have due to traditional scratch test allergy testing I had done years ago. I spoke with the allergy department at the Center and decided to continue on to the next step of intradermal allergy skin testing which I will begin next week. The intradermal skin testing is significantly more reliable.  I thought it was important because if there is any chance that allergens (especially to my dog) were contributing to my autoimmune issues, I may want to pursue non-medication treatment for it; specifically allergy injections.

Luckily, at this point, my health insurance covers a majority of the costs for Dr. L. My health insurance changed January 1st but at my November visit, I had my regular copays for the doctor visit and the blood work. I have checked with the Center regarding my new insurance which will have the same coverage as my old one, including for allergy shots if I do definitely go that route. However I am aware that there will probably be other suggested treatments that may not be covered by my insurance but my philosophy is to take that as it comes. I am also trying to look at it from the perspective that further treatment may help me eliminate some of my current prescription medication and overall health care costs (think hospitalizations and ER visits) and allow me to cut the cost of these, all of which have skyrocketed.

I made it very clear to Dr. L that I did not want to abandon my traditional treatment for the Sjogren’s at this time but yet, my goal was to eventually get off as many of my prescription medications as possible as I was on at least thirteen different prescriptions. That is a ridiculous amount of medication and I felt that I was probably having medication interactions. He was very receptive to this and said we would take it one step at a time. We would start with allergy testing, I would continue to wean off my steroids (which was my plan with my rheumatologist anyways), and he wanted me to start a new medication.

The idea of another medication surprised me coming from this type of doctor. It is called low dose naltrexone (LDN) and honestly, it is worthy of a blog entry all by itself. I had never heard of it before and it required a lot of research on my part. It is an “alternative” medication that he routinely prescribes for all of his autoimmune patients as it has been shown to have the capability to regulate the immune system and has had some good outcomes with certain autoimmune disorders. However I have only been on it for a month and am waiting a little longer to see how it continues to work out before I write that blog. The LDN can take a while to see a full effect so we agreed that we would meet again in February and see where things are at.



I liked the fact that Dr. L was treating this as a process and not overwhelming me with a million treatment options all at once because to be honest, I have seven or eight other specialists who are doing a great job at overwhelming me, no matter how unintentional it may be. I will admit, the process is very intimidating for me. I know about all things in traditional Western medicine. I know when to trust what a doctor tells me and I know when a doctor doesn’t know what he or she is talking about. As a nurse, I know about prescription medications (well except for LDN!) but not so much about supplements and herbs. It is certainly a learning process and one that I hope will prove to be beneficial.

Am I still a little skeptical? Sure. But I am also skeptical about putting toxic, possibly cancer causing drugs into my body as I have been doing. I am skeptical about dangerous side effects I may have, and have already started to have, from being on steroids the rest of my life. I am skeptical about the quality of life facing me until the day I die. So really, what do I have to lose?

Medicare, Blue Cross/Blue Shield, and Me

September 21, 2012 / / 5 Comments



Found this kind of funny since I have a busted up foot and have no health insurance. Well, at least at the beginning of the story…

 

Note: This essay was written Thursday September 20,2012

My best friend, who also is disabled and struggles with her own chronic health issues, recently made a statement to me in reference to how I was feeling about unexpectedly not having health insurance. She said that for people like us, having your health insurance abruptly ripped away from you is like a person suddenly being laid off from their job. Those of us who are disabled or have chronic illnesses may depend on our health insurance every single day just like most people have to depend on having an income from a job every single day. Once that gets taken away from you unexpectedly, how do you feel?

Anxious.

Angry.

Fearful.

There is a long story to why I have lost my health insurance twice since July 2012 and when I have more energy and more answers, I will blog more about my experiences with the Social Security, Medicare and disability systems. Today, I just cannot because the system has me completely exhausted and worn done and I want this entry to focus on the miraculous thing that happened today. A thing that despite all the negative things we have to say about the health care system, the insurance companies, and the government, proves that there are good people out there who care.

The short version is this. I switched from my ex-husband’s health insurance that I was on as part of our divorce agreement to Medicare Part B July 2012 as I found out I was being dropped from his coverage. I had been eligible for Part B for quite a while but chose to stay on his as it had better coverage and was more affordable. I had notified all parties involved about my decision and took all the appropriate steps and was told that if and when I was dropped from my ex’s group coverage, I would be eligible for Medicare Part B through special enrollment which is what I did. Because of my extensive medical care needs and Sjogren’s specialists that are only located in CT (I live in MA), I also signed up for a Blue Cross Blue Shield (BCBS) PPO Medicare plan; known as a Medicare Advantage plan. This became my official insurance for everything. It cost a lot more for premiums, co pays, drugs, labs, etc. but was my best option at the time.

Social Security Adminstration (SSA) made a huge error and dropped my Part B in mid July which in turn dropped me from BCBS. To this day, nobody can explain the error. It was a fiasco. They still owe me large sums of money that they mistakenly took from my monthly SSDI checks. Errors they have admitted to but have yet to set straight. However the health insurance was put back in place after approximately two weeks and life went on.

I contacted Congressman’s John Olver’s office in western Massachusetts to assist me in getting this money back. They began to diligently work on the issue but meanwhile once again, without notice, my Medicare Part B was dropped in September without an adequate explanation except to be told there was a systems error. This of course prompted BCBS to drop me from their plan which is standard procedure, leaving me with no medical coverage at all. I had no notification except from my local CVS pharmacist who called to notify me that one of my refills did not go through because my insurance was denied and then a voice mail from SSA saying “you no longer have Part B, I don’t know why, and don’t know what to do about it.” I was unable to connect with my case worker at SSA however I was able to speak with the congressional aid at Congressman’s Olver’s office who started to follow through on the issue for me.

Meanwhile I was dealing with an exacerbation of my Sjogren’s syndrome which required an increase in medications and more lab work, an orthopedic appointment of a six month old sprained ankle that had gone bad, and an MRI. I started physical therapy for said ankle and then had to stop as I had no insurance and was worried the issue won’t get straightened out as by this point I didn’t understand what the issue was or what was going to happen next.

I have learned to handle stress very well. I have to with an autoimmune illness because stress just makes my symptoms worse. But not having health insurance puts me in sheer panic mode and I had my first panic attack in years. I became afraid to answer the phone or check the mailbox because it was always bad news that just made my situation worse and more frustrating. My days became filled with dealing with emails, phone calls, documenting every single thing said or done, working with health care providers and the pharmacy; the list goes on and on.

After several straight days of dealing with this, yesterday I heard back from the Congressman’s office who told me she got me reinstated in Medicare Part B but being the skeptic I am, I knew I would not feel sure about this until I called BCBS the next day to get reinstated with them because they would check the system and I would know for sure I was all set.

So today I called and sure enough, according to the system, I did not have Part B and could not get my BCBS back. I told the rep how I had to borrow money to pay for my medications yesterday and had to cancel appointments which was concerning since I just found out that my MRI showed a torn tendon in my right ankle. Also I had missed an important eye doctor appointment today. She promised me that she would flag my file and watch the system for my name to come through as maybe I went into the system late yesterday at SSA and might come through tomorrow morning. I knew better though. It wasn’t going to be that simple.

So I hung up and just cried. I asked God why can’t the people in charge just make this right so I can get the care I need and so I can not feel so riddled with anxiety to the point where I feel like I am on the verge of panic? Don’t they realize because of my health issues how vulnerable I am? I have utilized every resource I have. I prayed for the strength to just keep going.

And then the phone rang. I hesitated to pick it up because well, it’s always bad news lately. It was a woman named Judy from BCB. She told me that effective today I will be fully reinstated onto my BCBS plan. I told her that I had just spoken to someone from BCBS who said I wasn’t in the Medicare Part B system yet so that couldn’t be done. This woman said that yes, that is true what the previous woman said and that that same woman had then contacted her and that the priority to them is that I receive the medical care I need. And apparently she was the one that was going to make that happen.

I started to cry, a lot.
Because I had health insurance again.
Because I could get the care that I needed.
Because someone cared enough to go to the edge for me.
I was no longer just a number.
I was a human being.

She said my coverage will be retroactive to July 1st (as it should be) and she will check to make sure that none of my recent claims will be denied. She said she needs twenty-four hours to get my prescription coverage in place but to bring all my scripts, including ones I paid for out of pocket so far, to CVS and they will be covered effective tomorrow. She said to make sure I attend my physical therapy appointment tomorrow and to be assured that I now have medical insurance. She will deal with the rest. She was my angel.

This is what happens when God is listening and when you are fortunate enough to find your way to the compassionate people who work in the health insurance industry. Thank you Judy.

Addendum: I called Blue Cross/Blue Shield again today September 21st to reconfirm that I still have an active policy because well, it just seemed all a little too good to be true. And yes, I still have coverage. So today I am off to get a prescription and another much needed physical therapy session. God is good.

























































Photo Courtesy of Google Images

Drugs and Money

October 27, 2011 / / 2 Comments
“Competition makes things come out right. Well, what does that mean in health care? More hospitals so they compete with each other. More doctors compete with each other. More pharmaceutical companies. We set up war. Wait a minute, let’s talk about the patient. The patient doesn’t need a war.” ~ Donald Berwick 

I am more disgusted than usual with the health insurance and pharmaceutical industries lately. Health care in this country is dictated by politics and money which of course in no way benefits the patient. However in an attempt to turn negative experiences into constructive information that may help other people, I am going to try and make this a blog entry more about empowering other consumers and less about my rant regarding the terrible demise of health care in this country. Because except for being an active, registered voter, I feel powerless about changing the health care situation in this country. However I do have some control over figuring out how to get my medical needs met and then passing that information on to other consumers.

I have a prescription steroid inhaler that has a copay of $50 per month which is considerably more than other inhalers on the market. The reason I need this particular inhaler is because it is the only steroid inhaler on the market for my autoimmune induced asthma that has been documented to not cause a fungal infection of the mouth called thrush. When using previous inhalers, I have had a terrible time with thrush spreading into my esophagus and causing complications which have included difficulty swallowing. Then I have to take potent antifungal medication to clear the infection. Since starting this new inhaler (Alvesco), I have been thrush free. This new inhaler is much more expensive and I think part of this is due to the fact that it is the only one like it on the market.

$50 may not seem like a lot to spend on something that works so well, but it is when you are on a fixed income, you have at least seven other prescriptions, and you spend approximately twenty-five percent of your income on medical care every single month. An income that is only sixty percent of what it used to be three years ago. I am not revealing all this information because I want my readers to feel bad for me. I actually hesitate to reveal these details because sometimes people (i.e. my well intentioned brother) take these comments as a statement that I do not have enough money to survive. So let me just clarify that I can manage. We all have to make choices in life and I manage because I make my medical expenses a priority. I get by month to month because I always look for the best ways to manage my medical costs and I am very good at managing my finances. I manage month to month because I am fortunate enough to share living expenses with someone who is always looking out for my best interests. I am quite blessed because I have a family behind me who would never let me go without a necessary medication and would do everything in their power to pool resources to make sure I have what I need. I know that there are patients out there who have no health insurance and minimal available resources to them.

But here’s the thing. I am fiercely independent now. Although getting sick and incurring these medical expenses is not my fault, it is my responsibility to figure out how to pull my weight in order for my boyfriend and I to manage our expenses. So when my steroid inhaler dose got increased recently and the insurance company started charging me a double copay every month ($100), I couldn’t just sit by and say “oh well, that’s how it works.” Because I never know when another unexpected medical expense is going to come from around the corner.

So what did I do? Well, I started by complaining about it on Facebook. This was a good idea because there were people on my friend’s list who had some helpful suggestions. I also contacted my pharmacy to see if they had any suggestions of how I could avoid the double copay. I went to the website for the Alvesco inhaler in the hopes of finding some type of discount program for this medication. They had a great discount program which would reimburse up to $75/each month towards my copay. Too good to be true? Of course! In the fine print it stated that because of state legislation, only one state in the union was ineligible for the discount program and of course that state was Massachusetts.

This all brought me to this morning which is when I decided to call the doctor who prescribes the inhaler and see if he had any suggestions. I spoke with his nurse who was quite helpful. We discussed a few options and came up with a plan. She said she would put aside the last two samples she had in the office of the inhaler for me to pick up tomorrow. Although she didn’t have any samples two months ago when I was there, she had them now. Lesson learned: ALWAYS call your doctor to check for samples! 

These samples would get me through to my next appointment with my pulmonologist next month during which time we could try and figure out if there was a way to rewrite the prescription so I only pay one copay. What the nurse suggested next though was even more critical. The nurse told me to see if I could use a mail order pharmacy through my insurance company. I had used one of these a long time ago, but haven’t investigated this option since being diagnosed with the autoimmune disease because my medications were changing on a monthly basis. Mail order programs give you a three month supply of the same medication at a time and that wasn’t practical for me. Then I pretty much forgot all about it. Now I have several medications that are the same dosage for periods of time so I decided to check out this option.

As luck would have it, my insurance does have a mail order pharmacy called Express Scripts. To be honest, I did a Google search of reviews for them and those reviews were not favorable at all. However after reading their website, I decided that at this point, the amount of money I was going to save was worth taking the chance with this company. The process was very easy. I called their 1-800 number and told them I wanted to start up an account and see if my regular medications were covered. Because they work with my insurance company, they already had my drug and doctor information. They would call the doctors for a new prescription for a 90 day supply of each medication. I told them which medications I wanted, double checked the doses, doctor names, and doctor phone numbers. They told me how much they would cost and how the payment process works.

For four of my medications I paid a two month copay for a three month supply of medications. The exception was one of my thyroid medications which is on a special discounted medication list and only cost me $3/month. By the end of the phone call, I had saved 40% on five different medications. The other advantage is that all of my reordering can be done online and I don’t have to frequent the pharmacy as often. That comes in handy when you are not feeling well. I am sure there are disadvantages to the program, but I am going to remain optimistic and hopeful that it will remain to be as easy and cost effective for me as it was today.

So those are some of my tips for saving money on prescriptions. The biggest point I want to make sure that I make here is to use your resources as wisely as possible. Contact your pharmacy, doctor, and insurance company. See what options are available and make sure to be open minded to what resources are available out there.

What ways do you have to save money on prescriptions?

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